Katybug

Mack's Mom - Thanks...I will keep him in mind. There is one hemotologist at Hopkins that has systemic mastocytosis as a specialty but who know s if he will see people with a lesser form of mast cell issue. julieph85 - I see Dr. K for my POTS and migraines and have had a good experience with him. If you want to PM me, maybe we can talk about what's happened with you. I have been told by several docs that Dr K is the only adult specialist in this area. I do have a cardiologist I see who is the doc who dx'ed my POTS. She is not a dysautonomia expert but she is a very compassionate doctor who is willing to take time to listen and research. I don't know for sure but I think I'm her first POTS case, but, she at least knew enough to send me for the TTT and do the dx. She is also the one that started my Florinef and beta blocker. I'll PM you her name and phone number.

Rich, I have had to take Benydryl or Tylenol PM as well as Phenergan (promethazine) and they don't make my BP drop. I think just like anything else, this may affect some people as a side effect but not others. I think I got lucky. I have to use them for allergic reactions, to help sleep occassionally, and the phenrgan for nausea/vomiting and they do help me. Hope you feel better soon. Katie

Julie, I used to go out to happy hour on Friday and have 6-7 drinks over the course of 5-6 hours and be very under control. I wasn't a lush but I wasn't a light weight. I would also have a glass of wine or 2 if I went to dinner with my friends. But, my alcohol intolerance was one of the first and most violent symptoms I experienced. I would only get through 1/2 a glass (properly poured) of wine and I would barely be able to stay in my chair. I didn't feel drunk...I felt like I was going to pass out but was otherwise completely sober. I would also projectile vomit 2-3 hours after 1 drink. The first couple of times I thought I was unlucky and getting food poisoning but by the third time...well...I was going to nice restaurants...they couldn't all be giving me food poisoning. Then, on Xmas Eve 3 years ago, my friends found me just coming to on the floor of the ladies room after one drink. I had vomitted and then passed out. I couldn't stand on my own and they had to carry me to the car and then into my apartment. That was the last time I attempted a drink in public. I tried having a drink at home every few months but I just got sick every time. I now haven't had any alcohol in over a year...it just isn't worth how sick I get. I know I've read somewhere that alcohol intolerance is a symptom of POTS.

Alyssa, I'm glad you brought this up because I keep drinking and urinating and feeling totally dehydrated. I just told my mom yesterday that if I drink more, because I feel dehydrated, I just pee more. I feel like the more I drink, the more I pee and it isn't proportional (I urinate more than what I take in). Now that we have the heat on in the house, the feeling of dehydration is even worse. Like you, I also have relatively clear urine. It really stinks when you feel otherwise well enough to leave the house but you know you better know where all the restrooms are where ever you are going! Julie, I don't think I have been checked for D.I. What kind of testing should be ordered for that?

Does anyone know of a good doc in around the Baltimore area that is good with diagnosing and treating mast cell issues?

I agree with Todd...live it up and don't look back. Take each day as it comes and if there is a bad one, remember that there is always the possibility that the next day will be another good one.

Hey, Naomi! I really relate to this question....I am about to start tracking down more answers with a endo, rheumy, and hematologist for thyroid, EDS, and mast cell questions. There is a part of me that is really tired of the docs, the long explanations, and the poking and prodding. BUT, then I think about what I want my life to look like and this isn't it. And I know to change it, I have to find better answers. So, I guess what I'm saying is...I think you should go for it. We have to systematically eliminate what we do and don't have to get to the answers that are going to help us. And, it sounds like you have a reasonably captive audience with this particular doctor who is willing to run the test. If you put it off and find out in 2 years that you really do have Sjorgren's, how will you feel? Good luck and good thoughts to you. Katie

I was just thinking this today....I'm on an eating streak. I'll have a flare of my GI symptoms and will not be able to eat for weeks at a time...I eventually don't even feel hungry during these episodes. Then, just like you said, something flips the switch and the GI symptoms settle and I become ravenous. I can't get enough and eat all day like I'm grazing. It's really weird.

I take Florinef and it does help reduce the amount that I urinate most days. There are really bad days when the "autonomic dysfunction" switch seems to be dialed up to high when I still urinate more than I can take in. I won't go so far as to say it alleviates any major symptoms, but, I don't have any bad side effects at my current dosage (get headaches if we increase dose), so, I figure if it keeps me a little more hydrated most days, it's worth it.

Congratulations on the bike rides! I went through several really bad months over the summer and when I finally back to being able to walk the dog for 10-20 mins. a day, it felt like I got out of jail! Its like a new sense of freedom! I'm so happy for you!!

Hi dizzydaze, Syncope is just a synonym for "fainting". http://en.wikipedia.org/wiki/Syncope_(medicine). I would start by re-approaching the neuro and asking "what kind" of syncope you have, for example neurocardiogenic syncope is caused by a sudden drop in blood pressure (your TTT may have shown this). If this neuro can not explain why the syncope is happening, you may try to find a cardiologist or neurologist in your area that specializes in autonomic dysfunction to get a more accurate diagnosis of what is the root cause of the syncope. "Syncope" in itself is a very vague diagnosis and there should be a search for a root cause. Hope you get more info soon, Katie

Yup, me too. It can make me anywhere from a little symptomatic to being totally disoriented and not knowing where I am for a few seconds when I get off. I actually find going down worse. Like Serbo said, I try to look at my feet so as not to watch the motion.

Julie, I have never taken my BP while it is happening, but, I do experience the sensations you describe when I first get in bed...usually for anywhere from 15-45 minutes. I feel like its the blood redistributing through my body but that's only what it feels like...no science to back that up. I have a really hard time falling asleep. It usually takes 1.5 - 3 hours to fall asleep after I get into bed...it just takes longer if I go to bed earlier. I also think this may have something to do with adrenaline surges...at least the heart pounding part of it. I wish I had some good advice but I don't...I can only commiserate with you.

Sue, So glad to hear that you have a lead. I know you have mentioned suspicions of this type of issue before. Let us know how things progress. Katie

Hi Bren, I have this but I know for sure it is not from the florinef for me. I had it before I started taking the med. Katie

ruby, Until you got the docs to give you something else, you may at least try taking the phenergan at bedtime...that's what I do when I can't afford the drowsiness that comes with it...it usually holds me over until late afternoon or evening the next day. Its worth a shot if you are still vomiting. Hope you feel better, Katie

I would try eating foods high in potassium like bananas. I don't have cramping regularly but when I do, its usually that I need more potassium.

HI rubytuesday, I have/had what I thought were/diagnosed as GERD and gastritis. (Now I think that it is all really part of the dysautonomia and not classic GERD/gastritis...the GI just didn't know what else to dx my with cause it was prior to my POTS dx. ) I had been on all the OTC meds and they had stopped working, then I went ot Nexium which eventually stopped working. I would also go through periods of severe nausea, projectile vomiting, abdominal cramping and diarrhea. When I finally had an episode when I couldn't eat solid food for a month and a half, the docs gave me promethazine (phenergan) for the vomiting and belladonna for the cramping and diarrhea. I had to be careful to space these drugs out during the day so as not to create other issues but they got my GI issues under control and I was able to get off the Nexium type druga completely. I still have occassional bouts with the GI issues, but, it is no longer constant and I have scripts for the promethazine and belladonna to take as needed. When I have the flare ups it almost seems like I need to tkae these meds to get my GI tract to "reset" back to normal. It's almost like I have adrenaline surges in my GI tract that have to be shut off...I know that's probably not medically accurate...it's just what it feels like. I really feel for you as many of my worst days are during my GI flares. It's awful. Feel better, Katie

Hi Bren, I'm sorry you are so stressed right now. I totally get it...the waiting...the what-ifs.... But, keep in mind that dysautonomia can cause so many strange and weird sensations in our body, that there's a good chance that this is just another gift from POTS. All my good thoughts and energy are being sent your way.. Big hug, Katie

Yes, I get it when hungry or tired...I also then get a spike in symptoms when I eat (more at dinnertime that earlier meals). I also have a similar issue to Emma...I can not fall asleep unless I eat something while I'm laying in bed trying to sleep and I never ate that late beofre POTS. It almost feels like it helps shut my body off (I think it is probably related to the adrenal issues somehow.) My sugar always tests on the low side of normal. And I crave fast food when I feel bad and I think it has to do with the ridiculous amounts of salt in fast food. If I happen to venture out and I start to feel bad, I can usually get myself home if I stop at the nearest fast food joint and do some serious salt loading.

alicia, I definitely get more symptomatic when I have any sort of stress to my body, be it physical or emotional. But, what you say about your pets rings particularly true for me. But, I don't think it is a physical symptom from my POTS...I think I have come to depend on my four legged nurse-mades for a certain amount of support that I don't feel the humans around me can give (they try but they can't cause they're human). My pets (a dog, 2 cats, and even my horse when I go to see her) have that sense that humans don't have...they know how I am doing without asking and without me having to explain. When, I don't feel well, they lay quietly with me and ask for nothing but to be close. My dog literally knows (I bet from her sense of smell but who knows) which days I can manage a walk and when I can't...she will poke me with her nose on days when I can do it but on the bad days she just lays near me as though she wouldn't even consider a walk. And, my little fury friends also pass NO judgement about this whole situation, something, again, humans have a very hard time with. So, now, when I think there might be a health problem for one of them, it really is emotionally challenging because they are a large part of my support system and I just can't imagine them not being here. (I hope you all don't think I'm a nut! ) But, they provide the companionship that humans just can't right now. I think this is normal....it's one of the reasons using horses for both physically and mentally challenged patients is so effective. The animals just do things in silent, sublte ways that affect us in ways we often don't notice. Being chronically ill and often house-bound probably brings us much closer to our pets than we realize until we feel their health is threatened. Katie

dani, The Benadryl is usually ok for me if I only take 25 mg...you can take up to 50 mg but I really need about 12 hours of sleep if I take that much. If I take 25 mg around 8 or 9 pm and get 8 hours of sleep, I usually feel pretty good the next day. I do usually go for the Tylenol PM (which is acetominephine and benadryl together) because I also have a lot of joint pain that also contributes to not falling asleep. If you don't know how you will react to a Benadryl, I would suggest maybe trying this for the first time on a weekend when someone else might be available to watch your daughter if you need to sleep it off the next morning. It's always a crap shoot with us since we all react a little differently and many of us have strange drug reactions. I always try new things when I know someone else is around in case something goes wrong. Katie

Hi dani, Two things come to mind but they of course will work differently for each person: 1) Can you take something like a benadryl or Tylenol PM that will have a slightly sedative effect to help counter the adrenaline? 2) Believe it or not, when I can't sleep cause I'm really feeling wired up from it, I drink a cup of caffeinated coffee and it puts me out. Crazy, right?! It somehow works the opposite on me that it would on a normal person. I am one of the POTSies that is helped by a cup of coffee in the morning (it feels like it slows my heart and eases the shaking), so I would probably only try this if you know how you react to caffeine. Hope you get some sleep soon, Katie

rubytuesday, WHy did they say you'll get less warning signs? I haven't heard that one before...that's worrying cause I count on being able to get myself in a safe position. Katie

I think its because the blood is just sitting in your legs/feet instead of circulating properly which is how it gets rewarmed at your body core. Also, because it is not being properly re-oxygenated it isn't continuing to feed the cells oxygen to continue metabolic processes that give off heat.